Endometriosis Stories - Page 43

Chelsea CollinsUnited StatesSep 2011

Hi I believe that I to am suffering from endometriosis. I am 19 and have been dealing with the symptoms since 16. I thought it was normal but was lately proven wrong. I started off at my family doctor who did a pap an just stuck me on antibiotics. As the pain continued and would drop me completely to my knees, I decided to go to the obgyn. I have been going twice a month just to get a pelvic exam and more antibiotics although I tell them its not helping.

They have been saying well it might be endometriosis. I have begged and begged for the laparoscopy and have yet to get it. They don't understand how my paps are saying everything is fine and healthy. Well if you cant see a problem from one angle you look at another right?? My thoughts exactly. I have grown tired of the constant paps and antibiotics it does nothing. That isn't what is wrong. I have two cysts on my right ovary, I just had one bust so I know what a cyst feels like.

My symptoms are a stabbing feeling right in my cervix and it brings me to tears. I just yesterday admitted myself into the ER for them to run test and hopefully find the problem. After 5 viles of blood, a urine sample, a pelvic exam and scrapping, a trans-vaginal ultrasound, and a vital machine to see when the pain was worsening. They released me with anti inflammatory meds and a nice piece of paper saying we have not found the reasoning for your problem.

Endometriosis may be what's causing it, and a number for another obgyn. So at this point it seems apparent what is causing my pain. I called the obgyn and they set me up an appt for next week. Hopefully she will set me up for the laparoscopy before this all worsens.

AnnaUnited StatesOct 2011

I was diagnosed when I was 15 of having endometriosis, after being told by several doctors I was making it up. But finally it was found, along with several cyst. I had a laparoscopy a week after the doctor found it..and it came back with in a year,.. found more large cyst, had surgery again, and it repeated itself with in a year again.. I'm now finally getting it through my head to stick to the diet. ..

I wanted to say thanks to those who put positive stories about getting pregnant. My husband and I have been married nearly a year now and want a child so bad. I was pregnant recently and lost the baby after 6 weeks.. We are considering IUI- Intra-uterine insemination.

Debbie BerrymanCanadaOct 2011

I was diagnosed two years ago at the age of 31. It was six years ago when they found my first cyst the size of a grapefruit on my left ovary. I am one of those unlucky who had pain 24/7. It was just a matter of measuring it on a scale from one to ten every morning when I woke up. It was the removal of the third cyst and a different doctor who told me I had endometriosis. I’ve had four surgeries in two years. It’s the only way they could control it and they also removed my left ovary (the troublemaker!), and severed a nerve on the underside of my uterus in the hopes of less pain.

Two months later it was back. The first surgery lasted about 6-7 months. Also, six different birth controls to try to minimize my cycle but I am one of those unlucky ones that just bleeds constantly. On the last one, I began feeling so much pain, it felt like labor, and I passed what turned out to be an endometrial polyp the size of a grapefruit. Scared the daylights out of me! I cried to my husband that my woman parts were falling apart!

In the beginning of September, I stopped taking all birth control because on top of everything else, my hair was falling out in clumps! I was so depressed, hopeless, and full of the “why me?”. Intimacy was a dreaded act, because although I still desired my husband, that desire cost me even more pain than normal for about 2 days. Going to the washroom filled me with anxiety and fear.

Exercise was laughable. The worst part was the fatigue. My doctor told me that my body was constantly attacking these lesions, so it was normal for me to be tired ALL the time. He compared it to how you feel when you fight a flu, tired and worn out. I started looking into herbal remedies and even made a visit to a doctor who practices traditional Chinese medicine. I am a hairdresser and I’m on my feet all day. Sometimes I was doing hair slightly bent over, trying so hard not to grimace with pain.

The funny thing with this disease is, YOU DON’T LOOK SICK. Other than the huge bags under my eyes, no one could tell. I was sick and tired of lying when someone asked me ” how are you? “. The more research I’ve done, the more I realize that NUTRITION IS VITAL with this disease. I’ve started a nutritional regimen since the beginning of October, and my life has changed. Inflammation is a huge issue with endometriosis, it makes or breaks your day. Soy is one of the best natural anti-inflammatories but it also mimics estrogen in the body so I thought for me, soy was out of the question. It has something called isoflavones in it which is the estrogen culprit.

My energy is back with full force and I am enjoying my family and work again. I was very sceptical to try it, but I was sick enough to give it a go. Thank God, I did. There is so many women who suffer daily in silence with this disease. When I realized the effect this was having on me, I felt a responsibility to share. A responsibility. Why are doctors not promoting nutrition? Maybe not enough research has been done, or even they, like me, thought if surgery and and drugs don’t help, what can?

There is NO CURE for this disease, only management. Only trial and error. Only hope for a normal life. Only determination to get through that painful day during a flare up with a fake smile. Smile through the hurt. Just smile and say, ”I’m fine, how are you?”. Only a woman who has suffered with this disease can understand. Others can be compassionate, sympathetic, and supportive and that helps, but can they TRULY understand what you’re going through?

As an endo-sufferer, I can. I can challenge anyone, even my own doctor, whom I respect and trust dearly, to look into the power of absorbable nutrition. Tell me it won’t work and I’ll ask why. Why didn’t the surgeries work? Why didn’t the hormones work? I believe nature has provided all of the ingredients to help our bodies function normally. It is up to the great minds in science to discover how and why and to share it.

For my fellow sufferers, please email me. I would love to share support and feedback. newhealth4u.deb@gmail.com

Carol SantosPhilippinesOct 2011

I have been diagnosed with endometriosis 7 years ago I was 27. I used to have long periods during the early years that would last up to 2 weeks I could even remember that I was brought to the hospital and the doctor said that I was anaemic. I realized that there was something wrong with me when my stomach all of a sudden became bloated, difficult to pee and poop, back pain that I have to take ibuprofen several times a day, and I couldn’t even bend my knee to wear socks.

I've been in and out of the hospital because they couldn’t diagnose what was wrong with me, they initially thought that I have UTI and gave me strong antibiotics. Till finally I went to A gyne and immediately asked me to do have an ultrasound that's when we learned that I have endometriosis. I've been on pills in and out and regular check ups. Until on 2006 I had have a major operation to remove the cyst on my left and right ovaries. Doctor doesn't want to remove the ovary giving me hope to have a child.

Now, after 7 years and I'm 35 and still fighting with endometriosis, my husband and I have gone through iui, after 12 days I had my period. It is quite depressing to see the blood after days and months of hoping. Hopefully we can go thru IVF next we come in to see a fertility dr. Hoping for the best to all endo fighters.

Lenore BachUnited StatesDec 2011

The diagnosis for Lenore was delayed by over 3 decades resulting in disabling damage to her internal organs, but she eventually found the best surgical help from an endometriosis specialistThere is an 11 inch laparotomy scar running down the front of my abdomen, the result of undiagnosed endometriosis left to multiply and fester inside of me for more than three decades. Today I am 51 years old, and I had one of the most advanced cases of stage IV endometriosis that my surgeon had ever seen. Even as a teenager, I had painful periods with severe backache, headaches, cramping and passing blood clots, but I just took some aspirin and went on with my life, because after all I was very busy and there was much to do.

In my late twenties, I was sick and in pain with my period for three weeks out of the month. I knew something was wrong, but I didn’t know what, so I just kept on going. I married at 31, and had trouble getting pregnant. Eventually I did get pregnant with the help of weekly acupuncture treatments and a macrobiotic diet. The pregnancy shifted all of my hormones, and because of the increased progesterone I felt the best I had ever felt in my entire life.

After the birth of my only child when I was 34, I did the same thing as before, I just went on---I had to, because now my life was more busy than ever with a beautiful, healthy new baby boy to care for. But my strategy to just keeping going could not go on forever. And stage IV endometriosis finally stopped me in October 2007, when I was 47 years old. I ended up in the hospital after constant abdominal pain, vomiting blood and not being able to pass a bowel movement. The MRI showed a swollen mass in my upper right pelvis. Surgery was scheduled for the next day, and because the surgeon had no idea what he was dealing with, the best course of action left at that point was the invasive and aggressive abdominal laparotomy.

It didn’t take long for the surgeon to find what he was looking for: a 100% obstruction of the bowel at the ileocecal junction caused by endometriosis---the short explanation: endometriosis lesions had wrapped around my large intestine and strangled it shut. A bowel resection was done, I lost one foot of bowel that day. Endometriosis had also encased my left ovary causing a chocolate cyst, so my left ovary was removed along with my appendix that was also covered in endometriosis. This was the first time that either my husband or myself had ever heard the word “endometriosis.”

After surgery, I was so happy to have that terrible pain in my pelvis finally gone. But my happiness and sense of relief was not to last long. About 4 months after surgery I started having trouble passing bowel movements just like before. Not again, I thought---what can be causing this now? Certainly another bowel obstruction could not have formed in such a short time. I consulted an expert on endometriosis, who advised that more than likely there was indeed a second near-obstruction deep in the cul-de-sac of my pelvis that the surgeon had not seen—meaning: the surgeon had taken out the first massive obstruction and believing that to be the problem, had closed me up not realizing that a second mass of endometriosis was in the process of obstructing the lower bowel deep in my pelvis.

The second near-obstruction did not present like the first total obstruction. This second obstruction was not as active, and did not cause the extreme pain of the first obstruction, so that gave me some time. And I needed time to figure out what to do now that I knew it was there. Some days it seemed to get better, and because I was not in a lot of pain, I just went on as usual. Until the spring of 2011, when I finally understood that I was not getting better, and that if I needed a second surgery then I wanted the very best person possible to operate.

I required a specialist in endometriosis. I met Dr. Cindy Mosbrucker, MD on June 30, 2011. She is an endometriosis specialist practising in Urogynecology and Pelvic Surgery, in Gig Harbor, Washington. She took one look at my ultrasound scan, measured the endometriosis mass at 2 cm by 3 cm that was sitting directly on my bowel, and scheduled me for surgery. There would be two surgeons for this second surgery: Dr. Mosbrucker to remove the adhesions, the endometriosis lesions, and perform a complete hysterectomy. And Dr. Linda Pai, MD (also from Gig Harbor, Washington) would perform the bowel resection—this would be my second bowel resection due to endometriosis.

For my second surgery Dr. Mosbrucker and Dr. Pai used a new and innovative surgical tool called the da Vinci Laparoscopic Robotic. It allowed the surgeons to enter my abdomen with six very small incisions, and they could see what they were working on magnified many times by the HD cameras on the robots hands. The miniature size of the da Vinci Robots’ hands allowed my surgeons to work in much smaller areas where human hands could not go; and the no- physical touching of my internal organs by the surgeon’s glove meant less trauma to the organs needing repair.

Now, since I have endured two major surgeries using very different surgical methods, I can tell you without a doubt that my second surgery using the da Vinci Laparoscopic Robotic was much easier for me to tolerate as a patient.

Here are a few examples why: -- I was off prescription pain medication one week after surgery, not even an aspirin ! -- I was walking 30 minutes a day, up hills, at 2.5 weeks after surgery—still without needing an aspirin. -- At 3 weeks past surgery, I could walk 40 minutes per day, up hills. -- At 4 weeks past surgery, people were asking me where I had gone on vacation because I looked so good! Compare this to my first surgery, in 2007, that was a conventional laparotomy: -- I was in a lot of agony from the 11 inch surgery incision covering the entire length of my abdomen. -- I was on prescription pain medication for one month following surgery, and then aspirin daily after that. -- I did not even consider walking to exercise, and certainly did not have enough energy to walk up hills.

It was 3 months into my recover before I even attempted to walk 15 minutes. So take it from someone who has been down the very long road of endometriosis: this disease is nothing to fool around with so take it seriously and get the proper diagnosis. Find the best endometriosis specialist you can. And if you need surgery then go with the da Vinci Robots--- you’ll be walking up hills in no time at all!

In closing, I am eternally grateful to my two surgeons, Dr. Cindy Mosbrucker, MD and Dr. Linda Pai, MD for practising medicine at the very highest level of expertise and excellence of care. They set the bar higher for what a really good doctor should be.

ElizabethUnited StatesDec 2011

I was diagnosed with ovarian cysts at the age of 14 after months of horrible periods. I at one point had 7 cysts at one time, one being the size of a grapefruit ( I only weighed about 110 lbs at this point in time) I soon went on the pill as suggested and the cysts would come and go with my period. I had to leave high school bc I was in such agony around my period I would miss 2 out of 4 week is school monthly. My cysts finally got under control but I was still on horrible pain.

I had my first laparoscopy in 2008 at the age of 18. Come to find out I now had endometriosis. Stage 3. My obgyn burned as much as she could but had to leave what was left on my intestines and bowels as not to perforate them. I got better for about a year, felt normal finally. Then the pain started again, I tried lupron depot shots- and after 6 months, $5000, and 20 lbs later I have up on the shots. I went to a 'specialist' who put me on 2 high dosages of birth control a day.

I no longer got my period. He wanted me to go up to 4 birth control pills a day!!!! Which most likely would have killed me my obgyn told me later. Pain still never went away. In 2010 I had my 2nd laparoscopy which my doctor found some endometriosis but most pelvic congestion syndrome. The veins on my ovaries and all inside my pelvic were varicose and enlarged. The pictures were shocking!! She said she thought it was most likely from the high dosages of birth control the 'specialist' put me on. Not much has been done.

Since then I've tried acupuncture, pain management, anything I can think of. At this point I live on Vicodin just so I can get up in the mornings, and recently lost my job. This website is incredibly helpful it reminds me that I'm not the only one and my symptoms are real day after day, feeling this way sometimes I think to myself ' maybe you're faking it?'. I know obviously I'm not but to hear others going through it and the symptoms given reminds me it's not my fault and I've been trying to fix this since I was 14. I am 21 now and still looking to feel normal.